#1

I don’t even know where to start in this post so I guess I’ll recap some of the beginning and go from there. Last June (2013) I went for my first hearing test in 20 years. I was told I had low frequency conductive hearing loss that could possibly be corrected by surgery, as well as a “small amount of SN high frequency loss” in my right ear (with my left ear being low normal) and referred to an ENT. Fast forward to August when I saw the ENT, who diagnosed me with otosclerosis and told me “a stapedectomy will fix your hearing permanently” (which I knew not to be true, at least in terms of the longevity of a stapedectomy). After two subsequent hearing tests, allergy testing (to determine cause for eustachian tube dysfunction), and finding a different (read: competent) audiologist, I then saw an ENT whose specialty is in ear surgery. He’s not an otologist apparently, but he is one of only two ear surgeons in the city where I live. He took a look at all 3 audiograms and told me that based on the fact that my conductive loss appeared to be predominantly in the low frequencies, and the loss in the higher frequencies looked to be sensorineural, he couldn’t diagnose me with otosclerosis, but rather mixed hearing loss with a conductive loss of unknown cause. He told me it was hereditary, that it would likely progress, and that was the end of that visit.

In February of this year I began seeing a new GP who did a large part of her residency with ENTs. She looked at my audiograms and told me that I might want to go for a second opinion. So I did. I saw a neurotologist today. His diagnosis was mild otosclerosis. He feels quite confident that a stapedotomy is in my future. I asked him directly how the only two ear surgeons in my city could come to completely different solutions. He answered saying: “You asked for a second opinion. This is my opinion.”

Today’s neurotologist essentially told me that the timing of a stapedotomy is up to me. He said he could do it in one year, which is how long his wait list is, but he didn’t think I would derive that much benefit from it at that time. He told me to have my hearing checked every 6-12 months, and to go back to him when things got worse. When I asked him to quantify “worse”, he simply said, “when you don’t feel like wearing a hearing aid anymore”. He wasn’t willing to give me a severity category because he said different people have stapedotomies done with different levels of hearing. He described my otosclerosis as “mild” but the hearing loss in my right ear as “moderate”. He also told me that, on average, stapedotomies tend to wear off in 10-15 years, stating that, of course, there are exceptions in both directions. His strongest recommendation was to have it done prior to my return to the work force once my kids are old enough to be in school. The other thing he said is that while he feels most confident that it’s otosclerosis, he thinks another option could be that there is some sort of breakage in the ossicular chain. Either way, he recommended exploratory surgery “when I’m ready”. Worst case scenario, according to him, is that I have extensive erosion of the ossicles and nothing can be done at the time of surgical exploration, in which case he’ll send me on my way and make some recommendations regarding implantable hearing devices.

One other thing he said, that has certainly fit with my experience, is that the “traditional” set up for hearing aids often doesn’t work for the person with a predominantly conductive loss. Honestly, while everything is definitely louder in my aided ear, speech is way more garbled with the aid than it is without the aid. I often don’t wear my hearing aid because quite frankly, I understand speech more easily without it. Yes, people need to speak louder, but at least I understand them! With the aid in, even if they speak louder, it’s not always intelligible to my brain. I have discussed this with my current and past audiologist, both of whom have said there isn’t anything else they can change…

I went to today’s appointment thinking that the neurotologist was going to follow up with my eustachian tube dysfunction, and tell me that otherwise my hearing was just going to deteriorate and nothing could be done. His diagnosis of otosclerosis and recommendation for treatment couldn’t have surprised me more! I thought that door had been closed, so now I have many questions:
-How is it possible that two specialists in their field could come up with completely different diagnoses and recommendations?
-How can I know whose diagnosis is correct? There isn’t a third specialist in the city I live in, and even if there was, I’m not sure I could mentally handle another different opinion.
-How do I know when/if my hearing gets bad enough? I’ve read that surgery isn’t the best option (that the results won’t be as good) unless the hearing loss has gone beyond the moderate level. Is this correct? If so, does that mean I basically wait until I’ve gone into the moderately-severe or severe range?
-Everything I’ve read says that a conductive hearing loss should max out at about 60 dB, so do I just wait until that point to have surgery?
-What are the chances of this turning into cochlear otosclerosis? He indicated that if it hasn’t done that by now, at my age (41), it’s not likely going to move into my cochlea. Is this the experience of others with otosclerosis or those who treat people with otosclerosis?

Would it help if I posted the results of all my audiograms? If so, say the word and I will do it.

At this point, I’m confused. I don’t think my hearing is bad enough at this point to risk surgery, so I’m not planning on going that route as of now, but if things get substantially worse, then I might consider it if I have enough information to make an informed decision.

Thank you, in advance, for sharing your wisdom. I just have no idea what to even think after today…

Kerry

#2

Wow
When I had my first stapedectomy my otologist said to do the worst ear first and I had a mild to moderate loss at the time, was around age 40 and I think I am still deriving some benefit 25 years later but now have sensorineural loss as well so who knows. I did not need a hearing aid after surgeries for about 15 years then used one aid only for many years although audiologists prefer two. My hearing improved dramatically after the first surgery.
I would do as much research as possible if I were you to help make a decision but I personally have always been really glad I had the stapedectomies. I was lucky enough to have Dr. Lippy of Warren Otologic in Ohio and he created some artificial stapes bones many years ago. Maybe his old research is still out there.

#3

Thanks for your response, lindamce! It seems nobody else is brave enough to enter into this discussion. I want to clarify something you said in your post. When you had your first surgery, are you saying that your hearing in that (the worse) ear was classified as mild-to-moderate, or that your hearing in the worse ear was moderate and the hearing in your better ear was mild? I’ve been under the impression that if my loss was “only” mild, nobody would be willing to operate, and had actually read somewhere that it was better to have the operation if ones hearing had progressed into at least the moderately-severe range. Maybe I misunderstood something? I would have liked to ask the neurotologist about that, but I was so shocked by what he was saying that my brain seemed to have left the building.

Do you feel like 15 years of benefit from the surgery was a good outcome? If you had to do it over again knowing that it would “only” last 15 years, would you still do it?

In terms of researching, I know a fair bit about otosclerosis now, but I have no idea who is the most capable person to perform the surgery in Canada. If I had money, I’d fly to the U.S. to have it done, probably the Lippy clinic or at least the House Ear Institute, but that’s not really an option right now. In Canada, the cost of stapedotomy surgery is fully covered, which is the only reason that I can even consider having it done. In asking around, nobody seems to have any idea who a good ear surgeon is in Canada. There is a paucity of Canadian websites/forums regarding hearing loss it seems. I know of one gentleman living in a nearby city who had the surgery done by the first surgeon I saw - the one who told me that I don’t have otosclerosis - and he was quite pleased with the outcome of his surgery. But I don’t know of anyone who had it done by the doctor I saw last week. Interestingly, though, I have more faith in the doctor I saw last week because I’ve just learned that the previous one didn’t actually do something he said he’d done, and he actually blatantly lied in giving test results, so on that basis alone, I’m not sure I’d feel comfortable going forward with him even if he did suddenly change his mind and decide I have otosclerosis. Anyway…I digress.

I think for now, since I’m not 100% convinced of the diagnosis, I’ll do what the doctor I saw on Friday recommended, which is have an MRI of my temporal bone, sinuses, etc., see my audiologist every 6 months and essentially watch and wait. I don’t mind my hearing aid so much these days, and I’m a little hesitant about the idea of someone manipulating wee, tiny bones in my ear. Also, it seems that for most people who have had a stapedectomy, the benefits seem to wear off long before your felt yours did, but this is based on reading several hearing loss forums, so perhaps that’s a misrepresentation of actual statistics. Statistics are difficult to find!!! I’m just not sure 3-5 years of benefit would be enough reason for me to have the surgery.

Thanks again for your response!

Kerry

#4

if you were flying to the US I would highly recommend the Cleveland Clinic.

— Updated —

if you were flying to the US I would highly recommend the Cleveland Clinic.

#5

Doc;

I wish I could consider the US as an option, but finances are way too tight right now, and will continue to be for the next several years until I’m back in the work force. In addition, I’m still not 100% convinced that I do, indeed, have otosclerosis. With the first ENT saying “You do have otosclerosis” last fall, then being told by a neurotologist in March that I might have a “slight case of otosclerosis in the low frequencies, but nothing that’s surgically correctable”, to being told last Friday that I do have otosclerosis and that I’m an “excellent” surgical candidate, I’m just not sure who to believe. I guess time, subsequent audiograms, and the upcoming MRI sometime later this year will help sort things out. Or not. In the meantime, if you (or anyone else with experience/expertise) want to share your opinion, I’ll forward copies of my audiograms after I get my next one done tomorrow.

I will keep the Cleveland Clinic in mind, though, in case I ever win the lottery! I guess I should start buying tickets;)

Kerry

#6

One critical factor that is missing are you’re bone conduction thresholds. That information indicates the amount of improvement you can anticipate from a stapedectomy. Can you get that information?

Classic cases of otosclerosis show a family history of hearing loss on the female side, with onset in the mid 20’s and or when hormones change because of pregnancy. It can skip generations. A recheck of hearing every six to 12 months is a reasonable recommendation.

If you have normal bone conduction thresholds you should be able to get good results from a hearing aid. However, if they are not tune properly or if you have a dome that is too occluding then you won’t hear well. A closed dome or power dome is going to make everything sound loud and booming with little clarity or sharpness. The Oticon “plus dome” or “bass double vent dome” can make a big difference, as long as the settings are recalculated to account for the change in “acoustics” in the software.

— Updated —

One critical factor that is missing are you’re bone conduction thresholds. That information indicates the amount of improvement you can anticipate from a stapedectomy. Can you get that information?

Classic cases of otosclerosis show a family history of hearing loss on the female side, with onset in the mid 20’s and or when hormones change because of pregnancy. It can skip generations. A recheck of hearing every six to 12 months is a reasonable recommendation.

If you have normal bone conduction thresholds you should be able to get good results from a hearing aid. However, if they are not tune properly or if you have a dome that is too occluding then you won’t hear well. A closed dome or power dome is going to make everything sound loud and booming with little clarity or sharpness. The Oticon “plus dome” or “bass double vent dome” can make a big difference, as long as the settings are recalculated to account for the change in “acoustics” in the software.

#7

Hi Ike;

I’ve read a lot about otosclerosis and was aware that it’s typically considered to be hereditary, although both neurotologists have told me that it’s NOT always hereditary, and that in some cases, it can be precipitated by a childhood filled with frequent otitis media, which was certainly my experience with my bad ear. There is only one person, a paternal aunt, with hearing loss (other than presbycusis of onset age 60+) on either side of my family going back 3 generations. She was diagnosed with a low-frequency conductive loss in one ear in her mid-forties, which was investigated and determined not to be otosclerosis. She can’t remember exactly what kind of testing they did, other than a CT scan, so she’s not sure how accurate her diagnosis is. She said that 10 years ago, her hearing loss was mild, but when she described her current hearing loss to me, it sounds like it’s at least moved into the moderate range now since she can’t hear conversation enough to understand it if someone is standing on her “bad ear” side.

Yes, I’ve had bone conduction testing. I’ve had my hearing tested 5 times since this all began last June. Every single audiogram has revealed some evidence of conductive hearing loss, but all to varying degrees. Extreme varying degrees. In some cases there’s been a 15-20 dB air/bone gap, at other times it’s only been a 5dB air/bone gap. I’m going for another hearing test today, so once I get that result, I’ll try to remember to post all of my audiograms. Honestly, I’m not so convinced my conductive loss is significant enough, at least in some of the audiograms, to merit a diagnosis of otosclerosis or the need for a stapedotomy. But then again, I’m not a hearing health professional, so I’m likely not the best judge of that:) The ENT I saw last Friday said that the best way for us to know what’s TRUE about my hearing loss is to compare serial audiograms done by the same person in the same office. This will be my second hearing test with my current audiologist, and she is who I plan to continue seeing every 6 months from this point on.

In terms of domes, I did try using a double-vented power dome. The smaller one (8 mm) gave incredible feedback every time I brushed my hair or my kids hugged me, and the bigger one (10 mm) seems quite occlusive in that my own voice sounds like it’s coming through a wonky speaker. So most recently, I’ve been using my micro mold with the hearing aid, even though the aid is set up for use with a dome. So, we’ll see if the changes she makes today for use with a micro mold improve the situation somewhat. Whether I use the dome or the micro mold, voices are distorted with the aid in, yet are clear with the aid out, which I’ve read (and been told by the neurotologist) is a hallmark of conductive hearing loss?!

Anyway, thank you for your input. I’ll try to input all of my audiograms in the next few days… You’ll have six to choose from!

Kerry

#8

Kerry,

Did PM go through? It kept kicking me to log in page every time I tried to send to you

#9

I’ve made a Word document with the results of all of my hearing tests since last June, and I’ve attached a link to it (the forum wouldn’t let me upload the file as it was too big). Yesterday my audiologist told me that my results from yesterday’s exam were “no change” from the exam she did last October…doesn’t seem to be true. I asked her specifically about getting a HA for my left ear and she said that I won’t get any benefit from one… I’m not so sure. I really like my audiologist and don’t have the money to get yet another audiologist involved, but I can’t help but wonder if she’s as competent as everybody told me she is.

My previous speech discrimination scores, in October, were 100% bilaterally at 70 for the left ear and 75 for the right. This time she used 70 dB for both ears and my speech discrimination dropped to 96 for the left and 88 for the right. I could barely hear what she was saying with the right ear and was struggling even with the simpler words. When I voiced my concern with her about the drastic decrease in speech discrimination, she said my numbers were “fantastic” and that she tried to make it harder for me this time. What??? So I did a bunch of reading online today and everything I’ve read (5 articles), suggested that the speech discrimination testing should give the patient the best possible chance to get the best possible result. I certainly don’t feel that happened yesterday. Anyway…I remain confused and probably will until the MRI results are in (I expect them to be normal) and the neurotologist takes an actual peek inside, one day, when I’m ready to deal with it…

Kerry

Files: http://www.schnell.ca/audiograms.pdf

#10

There actually wasn’t much change in the audios, just at 1000 Hz. That one may be a fluke, see if it stays the same at the next test. A 5 or 10 dB difference is within test/retest reliability.

Speech discrimination isn’t a really sensitive test, gives you more of a big picture, so those changes aren’t very significant. If you get less than 90% or so, it is recommended that you increase the presentation level to see if the score improves, but since your scores weren’t bad that day (and were 100% before) that’s probably why she didn’t do that.

I do agree with your audiologist regarding fitting your left aid. With your thresholds, I don’t think you’ll notice a difference, but maybe she can let you try one to see if you like it.

#11

Patricia,

For some reason I didn’t notice this post until now! Yes, the PM went through. Thank you:)

Kerry

#12

After 1.5 years of having a few different audiologists, a former GP, and a former ENT tell me that I’m crazy when I have described what seems to me to be a fluctuating hearing loss in my right ear, and constant pain and pressure in my head, worsened with even slight altitude or barometric pressure change, we finally have a diagnosis. I have an enlarged vestibular aqueduct with normal cochlea in my right ear only, confirmed via MRI. When I read about this, the symptoms fit my experience to a T. I had a major fall with concussion when I was 2.5 years old. I was diagnosed with “slight low frequency hearing loss” at the age of 3. I had debilitating vertigo with every respiratory illness when I was a child. I almost failed kindergarten because of my poor balance… It all makes sense now. Thankfully, I don’t have vestibular symptoms…yet…although I did have an episode of violent vertigo with my current sinus infection a few weeks ago, but that’s the only time I’ve had vertigo since childhood.

My current ENT failed to give me the results of my MRI (in which the reporting radiologist also advised urgent follow up as there were other potentially concerning medical issues seen). So when my husband became concerned that I’m still unwell with a severe sinus infection that has been treated with three different antibiotics, he took matters into his own hands and obtained a copy of my MRI results yesterday. When I called my ENT’s office to book a follow up appointment to discuss the results, I was told “If we didn’t call you back, the results were normal”, to which I calmly replied that they absolutely are NOT normal and would they like me to bring a copy of the results in to their office for them to see, since they clearly hadn’t read the radiologist’s note encouraging “urgent follow up within 1 week”. That shut the receptionist up pretty quickly. The soonest she could get me in to see my ENT is January 20th…even after I told her that I’m on my third round of antibiotics for a sinus infection (confirmed by the same MRI)… So much for universal health care in Canada:(

Anyway, I’m glad to finally have a diagnosis. At least now I know that I’m NOT crazy, despite what several people have told me over the last year. But seriously, I have the “classic” symptoms, so why did my ENT not suspect this? I specifically told him that I have extreme difficulty (pain, pressure, dizziness, temporary hearing loss for up to a week) with air travel, which is hallmark for EVA, and he was stil convinced that all I need is a stapedectomy for otosclerosis. I’ve never been convinced that he was right, and have felt all along that something else was going on since some days I hear quite well without my HA, and other days, well, I may as well be deaf in my right ear. I guess I’m not a truly classic presentation, because from what I’ve read, all head injuries subsequent to the one I had at age 2.5 should have caused some hearing loss, and it seems that most people with EVA are deaf by my age. And I’ve had several head injuries since childhood, with no obvious hearing loss. I think what caused the the recent drop was actually giving birth to my son. His birth was extremely difficult, with 5.5 hour of pushing, and the valsalva maneuver is known to cause hearing loss in people with EVA. I didn’t notice the loss immediately after his birth, but then he was in the NICU for a few weeks, so my mind was on other things. But I noticed about 11 weeks after his birth, after having my gall bladder out emergently, that my hearing wasn’t right… I’m sure the ototoxic antibiotics I received while in the hopsital for the gall bladder didn’t help at all… Anyway, I know I’m rambling. I just need to vent. And to think, my current otologist wasn’t even going to DO an MRI because I had “classic otoslerosis” - which I don’t! I have a significant conductive component to my LF loss, with only a slight conductive component to the HF loss - again, CLASSIC signs of EVA!!! This ENT is a top rated specialist in my province, and right now…let’s just say I don’t think very highly of him. And I think even less highly of him for not following up an urgent MRI result. (Thankfully, my GP dealt with the urgent MRI findings this morning. She would have done it sooner if the MRI receptionist had actually cc’d the results to her as I’d asked, but alas, she didn’t cc them, so my doctor had no idea!!!)

Getting over my rant, now what? It seems that EVA has no “typical” progression, but most young children who are diagnosed with it are severely/profoundly deaf by my age. So I guess I’m blessed to still have hearing in my right ear. I’m thankful for that. Do I assume my hearing loss is going to progress to severe or profound? Could it remain stable? I don’t have any vestiublar symptoms to speak of other than the one episode of vertigo 2 weeks ago during acute sinusitis, but should I expect to experience debilitating vertigo at some point in my future? I’m hoping to return to the workforce as a nurse practitioner once my children are in school, which is at least 5 years away, but now I’m wondering if I should be looking into job retraining? I do have one "good"ish ear, but my left one does have a mild loss, too, and since hearing losses usually progress, I don’t know how much sense it makes to assume that working in the medical field will be an option in the future. (The MRI showed no signs of cochlear issues, EVA, or otosclerosis in my left ear, so who knows what’s up with that one or what the prognosis is?!) If everything stays as it is now, of course it would be fine to return to work, but if not… Aargh. It’s very overwhelming.

Sorry for the vent. I’m just frustrated and sick of being told that I’m “crazy” and that I’m having “psychosomatic migraines” when, in fact, there is actually something wrong. But on the bright side, I’m not deaf yet!!! :slight_smile: And if that ever happens, there are cochlear implants.

#13

for all you folks who thought Obama-care was a good idea take note.

— Updated —

for all you folks who thought Obama-care was a good idea take note.